STANDING AGAINST A “WILLFUL AND DEADLY NEGLIGENCE”: THE DEVELOPMENT OF A FEMINIST RESPONSE TO THE AIDS CRISIS by Kathryn Hedger, B.A. A thesis submitted to the Graduate Council of Texas State University in partial fulfillment of the requirements for the degree of Master of Arts with a Major in History May 2018 Committee Members: Jeffrey Helgeson, Chair Jessica Pliley Mary Brennan John Mckiernan-González COPYRIGHT by Kathryn Hedger 2018 FAIR USE AND AUTHOR’S PERMISSION STATEMENT Fair Use This work is protected by the Copyright Laws of the United States (Public Law 94-553, section 107). Consistent with fair use as defined in the Copyright Laws, brief quotations from this material are allowed with proper acknowledgement. Use of this material for financial gain without the author’s express written permission is not allowed. Duplication Permission As the copyright holder of this work I, Kathryn Hedger, authorize duplication of this work, in whole or in part, for educational or scholarly purposes only. ACKNOWLEDGEMENTS This process would not have been possible without the continued love and support of my parents, Bryce and Beth Hedger. Thank you for everything. I would also like to thank my partner for all the times I have used you to bounce ideas, organize my thoughts, and commiserate with when the writing process grew arduous. Thank you for your stability, encouragement, and love. Finally, I must acknowledge my academic family. To all the professors who read over my endless drafts, to my colleagues in the basement who provided much needed laughter, and to my colleagues who have moved beyond the basement who answered all my questions about the process along the way, I thank you with all my heart. iv TABLE OF CONTENTS Page ACKNOWLEDGEMENTS ............................................................................................... iv LIST OF ABBREVIATIONS ............................................................................................ vi CHAPTER I. INTRODUCTION: “WOMEN DON’T GET AIDS. THEY JUST DIE FROM IT.” ...................................................................................................1 II. CONVERGENCE .............................................................................................36 III. EXPERIMENTATION ....................................................................................73 IV. FRAGMENTATION .....................................................................................119 V. EPILOGUE .....................................................................................................167 APPENDIX SECTION ....................................................................................................175 LITERATURE CITED ....................................................................................................182 v LIST OF ABBREVIATIONS Abbreviation Description ACLU American Civil Liberties Union ACT UP AIDS Coalition to Unleash Power AMA American Medical Association AIDS Acquired immune deficiency syndrome CDC Center for Disease Control FDA Food and Drug Administration GMHC Gay Men’s Health Crisis GRID Gay-Related Immune Deficiency HIV Human immunodeficiency virus LAP Lesbians AIDS Project NIH National Institute of Health NOW National Organization of Women SSA Social Security Administration vi I. INTRODUCTION: “WOMEN DON’T GET AIDS. THEY JUST DIE FROM IT.” By the early 1990s, female activists in the AIDS Coalition to Unleash Power (ACT UP) in New York City were fed up with the still-prevailing assumption that AIDS took only white male victims. While women, particularly poor women, constituted a growing percentage of those with the disease, they remained largely excluded from medical research and treatment.1 Women’s exclusion amounted to, as one activist group put it, “nothing short of willful and deadly negligence.”2 Activists identified the ways that such “willful and deadly negligence” created a range of peculiar obstacles blocking women from accessing equal treatment in medical research or even basic medical care. To make matters worse, even their best allies in other AIDS activist organizations either could not, or would not, incorporate women AIDS victims as full partners in their burgeoning movement. Women, therefore, took it upon themselves to change the national conversation around AIDS. For instance, in order to call attention to the devastating effects of this negligence, a group of activists unleashed a powerful billboard campaign across New York City. “Women don’t get AIDS,” the signs at bus stops read, “they just die from it.”3 Through this campaign and a myriad of their other activities, the women in 1 Subjects, Federal, Jan.-Dec. 1991. January-December, 1991. MS ACT UP: The AIDS Coalition to Unleash Power: Series VIII. Subjects Box 84, Folder 8. New York Public Library. Archives of Sexuality & Gender, http://tinyurl.galegroup.com/tinyurl/5tPMD1. Accessed 4 Feb. 2018. 2 Ephemera, Flyers, Handbills by ACT UP, Miscellaneous, 1988-1991. 1988-1991. MS ACT UP: The AIDS Coalition to Unleash Power: Series XI. Ephemera, Flyers, Handbills by Act Up Box 195, Folder 24. New York Public Library. Archives of Sexuality & Gender, http://tinyurl.galegroup.com/tinyurl/5tPMw2. Accessed 4 Feb. 2018. 3 Gran Fury, Women Don’t Get AIDS They Just Die From It, poster. (New York City: various locations, 1991). Posters can be viewed online through the Public Art Fund at 1 ACT UP joined many others in the fight against the invisibility of women living with AIDS. The women in ACT UP used mass demonstrations, media, and legal campaigns to demand recognition that women were getting and dying of HIV/AIDS. By the middle of the 1990s, women in ACT UP had raised awareness for women with AIDS and sued the federal government for withholding disability benefits from women with AIDS, lobbied to change the Center for Disease Control’s definition of AIDS, and won the inclusion of women in medical research related to the disease. After leaving ACT UP, these women turned to new places for their activism, but remained true to their convictions that gender inequality lay at the root of government’s and public’s misunderstanding of the AIDS crisis in women. AIDS activists achieved all this by bringing attention to and fighting the results of the sexist political and medical systems that discriminated against women with AIDS. By drawing on their own experiences as marginalized women as lesbians, as well as successful yet often frustrated activists, and by embracing an understanding of the interwoven oppressions at work in lives of women with AIDS, women in ACT UP converged within the mostly male organization to raise awareness for women victims of the disease. Together, they managed to challenge the agencies that prevented women from accessing care, and ultimately pushed ACT UP and AIDS activism to advocate for women with AIDS. However, activists remained unsatisfied in ACT UP and used their experiences to go in new directions to better serve women with AIDS. https://www.publicartfund.org/view/exhibitions/5735_women_dont_get_aids_they_just_ die_from_it#&gid=1&pid=2. Accessed January 11, 2018. 2 This thesis examines how women came together in ACT UP’s first New York chapter and combined their experiences in previous movements and their understandings of how race, gender, poverty, and sexuality overlapped to transform AIDS activism in New York City. This work brings attention to women’s health care activism in the 1980s and 1990s to demonstrate how and why women became activists. I will show that female AIDS activists converged in ACT UP, bringing their own histories of activism and experiences as marginalized women, and refined each other’s politics. As a result of this convergence, women introduced new debates and conflicts into the group that challenged ACT UP’s coalition of men and women of varying sexualities, races, backgrounds, and goals. These conflicts, while essential to refining ACT UP’s politics, spurred a process of fragmentation in which women left ACT UP and turned to new fields or returned to the fields they came to ACT UP from, like service work, the law, media, art, and academia. Throughout this process, from 1987 onward, the women who had transformed ACT UP argued that sexism and racism were the fundamental problems prohibiting women with AIDS from accessing care. Through their work in the AIDS crisis, activists pushed for visibility, care, and funding for women living with AIDS and created a more complete understanding of how AIDS manifested in different women which changed the lives of women with AIDS, and opened the door for more nuanced understanding of how AIDS impacted different male communities. Women were largely invisible in the scientific research of AIDS before 1987. The CDC first reported news of the disease in a June of 1981 Morbidity and Mortality Weekly Report. Five young, homosexual men had become sick with Pneumocystis carinii 3 pneumonia (PCP).4 The CDC raised alarms in the “M and M” report because PCP was incredibly rare. A healthy person’s immune system can fight PCP readily, so for the illness to be the cause of two deaths in seemingly healthy men was worthy of study. Only a few weeks later, the number of cases had grown to twenty-six, leaving the researchers at the CDC befuddled. An unknown malady was wreaking havoc on the immune systems of young, gay men. Because the first known people with the disease were gay, health agencies hypothesized that the patients’ homosexuality was the cause. In May 1982, a New York Times article labeled